In focus. Has patient autonomy gone to far? Geneticists' views in 36 nations.

Area of Science:

• Bioethics
• Genetics
• Public Health

Background:

• Societal views on genetic information and reproductive rights have evolved.
• Previous surveys indicate shifts in ethical considerations within genetics.
• Understanding current perspectives is crucial for informed genetic counseling and policy.

Purpose of the Study:

• To assess current attitudes among genetics professionals, patients, and the public regarding genetic rights.
• To explore views on complex ethical dilemmas in genetic testing and reproductive choices.
• To identify trends in patient autonomy versus population or eugenic concerns.

Main Methods:

• Anonymous questionnaires distributed to genetics professionals, primary care physicians, genetics patients, and the general public across multiple countries.
• Inclusion of hypothetical challenging cases to gauge responses to specific ethical scenarios.
• Analysis of 2906 genetics professionals, 499 primary care physicians, 1467 patients, and 988 public members.

Main Results:

• A notable trend towards increased respect for patient autonomy in genetic decision-making was observed compared to 1985.
• Majority support for prenatal diagnosis for sex selection and prenatal paternity testing.
• Varied support for prenatal diagnosis for deafness and for women with fragile X syndrome, highlighting nuanced ethical views.

Conclusions:

• The study indicates a significant shift from population- or eugenics-focused concerns to an individual-centered model in genetics.
• Respect for patient autonomy in genetic choices is growing globally, particularly in the U.S.
• Ethical frameworks in genetics are increasingly prioritizing individual rights and informed consent.